Monday, April 3, 2017

My current perspective on World Down Syndrome Day

I started this post 2 weeks ago on World Down Syndrome Day, and as is typical of my life, I’m hoping to finish it today. There is such a mix of emotions and so many things that I feel differently about now than I did five and six years ago. On that Tuesday, in most of my classes I did a Q&A with my students about DS. The conversations all went well, they almost always do, and I know the kids like asking about Tera and learning about her. I took tons of pictures of Tera and Zoey in their Team Tera shirts and posted all sorts of things on Facebook. Tom and I ordered dinner and I took time to reflect on our roles as parents of a child with DS.

But I’m constantly conflicted. The conflicting part for me is how I feel six years into this adventure. As I searched through Pinterest a few weeks ago for quotes to share about DS, the majority of them were things that I didn’t know that I quite agreed with. Of course that changes depending on our struggles at the time, but one of the common themes is feeling lucky about having someone with Down Syndrome in their lives. Enter conflict. Do I feel lucky to know someone that has given me insight into a world I formerly knew very little about? Yes. Do I feel lucky that it has introduced us to so many people we might not otherwise know? Yes. Do I feel lucky that my perspective has changed on so many things for the better? Yes. But do I really feel lucky that Tera, and we as a family, have so many struggles? Not as much. When I look at other kids we know who didn’t take three years to potty train, don’t have sensory struggles, don’t have multiple weekly therapy sessions to learn and practice things that come more naturally to most kids, can go to birthday parties with few issues, haven’t had pneumonia six times (seven times now), aren’t facing the possibility of open heart surgery, don’t have a pulmonologist, endocrinologist, ENT, cardiologist, and gastroenterologist, in addition to an eye doctor, dentist, and a pediatrician who we see more than many family members. And she has appointments with most of these doctors at least twice a year. We frequently spend days off, long breaks, and summers at doctor appointments because the available times are otherwise during school/work days.

I read so many parents’ perspectives and I honestly don’t know how much I relate to some of them when they express sentiments like, “I feel bad for parents who don’t have a child with DS”, “DS is the best thing that’s happened to our family”, “I wouldn’t change any part of my child”, and many others. Here’s where I feel like an outcast in the DS community. We cried when we got Tera’s diagnosis, and sure, when the shock wore off we accepted it and moved on. Many of the things I feared that day were unfounded, but so many of the things I didn’t know about are struggles we deal with daily now. Like her sensory issues, behavior problems, and so many of the health things I didn’t even know I had to worry about. I’m more proud of Tera and her accomplishments than I could ever possibly express. I’m proud of her determination, her huge heart, and loving disposition. And when we celebrate World Down Syndrome Day it is a celebration of Tera and her place in our family and this world. I use it as a day to try and dispel common misconceptions and stereotypes. In the past six years, there are at least 1,000 more adolescents that know about their math teacher/advisor’s daughter who has DS and what that does and does not mean.

But I still feel like after six years, I am often in a tough place mentally and emotionally. Nobody reading this should pity us. We are never looking for that and don’t want it. What we do want and why I share these things is for understanding. We want everyone else to be as proud of Tera as we are. But we also want everyone to understand when we are stressed, tired, not good friends, don’t answer emails, texts, and phone calls, are short on patience, pass on invitations, ask that things be held or done at our house, and seemingly spoil our kids, we have our reasons. Frequently it’s because Tera just functions better at home and we’re too tired to work through that some place else. Sometimes we try doing something we think might be fun and it’s a disaster. Sometimes it works out, but we never know which one it will be. Sometimes large groups of people are no big deal, sometimes we have to leave quickly. Sometimes even a small family event can be too much and we’re left angry, tired, and upset that we can’t help her. It can be a little overwhelming to pack to go anywhere and make sure that we have a device that can help distract her, headphones in case it’s too loud, squeeze balls, toys or coloring books in case she needs a break, and that’s just for Tera. We also have Zoey who is only two and a half and needs her own set of things.

And so in honor of World Down Syndrome Day (albeit two weeks late), here’s my perspective. I’m the mom of a beautiful, loving, sweet, caring, determined, smart, independent, funny, and energetic six year old girl who has Down Syndrome. She is a challenge and it goes without saying that she is worth every second of stress and exhaustion, every tear, and every fear. We deal with every obstacle that comes our way as a family with a pragmatic viewpoint. We don’t get optimistic, we try not to be too pessimistic, but things can be challenging. Do we understand that our situation, every aspect of our lives, could be worse? Without a doubt, every minute of every day. But we have our challenges and I’m proud of what we’ve made it through. Currently, both girls have double ear infections and Tera has pneumonia. They both need an antibiotic twice a day for ten days, two nebulizer treatments before bed, probiotics, and multivitamins. Zoey also needs her thyroid pill. Tera also needs allergy medication, a nasal spray, and Motrin for a fever and pain relief for her ears. While home, she needs her neb treatments every four hours and when she goes back to school she’ll have to use her inhaler. I’m sure I’m forgetting something.

This is our life. I can’t say I wouldn’t change it, because things could be easier for them, but this is what we deal with and in spite of our struggles, we love each other and have a pretty damn good life.

2 comments:

I appreciate your writing so much. Thanks for writing so frankly about a hard topic. I nodded a lot while reading along - especially when you talk about how sometimes it works to be in a large crowd, sometimes it doesn't, sometimes it's just easier to be home instead of going out. It just depends.

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